History

The attempt to develop a European CF patient registry started around 1995 in the Paris meeting sponsored by the ICF(M)A and hosted by the French CF Association. However, it was felt that the attempt to construct a large and complex database was too ambitious at that time. Subsequently there was the Roche database that produced important and valuable information. However, it was very expensive to run and closed when the funding stopped. In 2003, representatives of national registries met to discuss the building of a European Registry.

In 2006, under the EU Framework 6 initiative, funding for a Europe-wide registry led by Anil Mehta (Dundee) was awarded as part of the European Coordination Action for Research in Cystic Fibrosis, EuroCareCF. The aim was to provide a registry to collect demographic data, and optionally clinical data for all patients with CF in Europe. EuroCareCF and ECFS have been working in close partnership to build this registry, also collaborating with CF Foundation (USA).

In 2008, EuroCareCF project closed, but the ECFS working group on the registry continued the work. At the moment, the registry collects data mainly from national CF registries, but a pilot study is being carried out for countries without a national registry, for which specially developed data-entry software is provided.